Dear Family & Friends Far and Near,
The last couple of weeks have been full of new challenges and experiences for Allie. I'll begin with the Lobster Feed which was incredibly fun. It started out a bit rocky when I drove Allie's chair over a makeshift plywood ramp that had been put over the curb into the park area where the event was taking place. Big mistake! I don't know much about ramps (but am learning quickly) but my guess is it was too short which made it too steep and then at the "top" of the curb onto the dirt there was no transition. It just kind of dropped off. Anyway scared the heck out of us both as her chair seemed to be tipping back much too far and to correct I kind of veered to the left which whipped her head a bit and hurt her neck. I made the best show I could of it not being a big deal and that she was never in any danger but my heart was pumping out of my chest. Yet another important lesson was learned. Allie took a quick couple of minutes to calm down and get past the pain and then let it go which was great. Needless to say, we found another way out when it was time to leave.
The food was wonderful and the company was even better...thank you again Kerry & Brianna. This is a very friendly and well run event and we hope we are fortunate enough to go again next year. For Allie it was a bit difficult as it got dark because it becomes impossible for people to read her lips. Since her chair can't get under a table she never gets very close and since she can't move her head, it's difficult for her to feel really part of what is going on even with a small group. For Al this is frustrating and makes her very sad. As many of you know, before the accident, Al was a very outgoing, talkative and physically active girl. Still she enjoyed herself and was really glad she went.
Tuesday of last week was the day Allie was scheduled for a trach change. That morning we woke to the first big storm. Allie woke up afraid to drive over the hill to Kaiser, sad about rain because it reminds her of her accident, (even though she still cannot remember even getting in the car that day) and really worried and nervous of what a power outage would mean to her ventilator working properly. It became clear pretty early that a trip over the hill was too risky. Fortunately, with $$ from the fundraiser (thank you all) we were able to purchase a very good generator. I ran through it again with Allie that when the power went out the internal battery in her ventilator would kick on (it has a short life but it goes on immediately)and in less than a minute the generator would kick on and run the whole house. Worse case scenario we have a back-up ventilator on her chair and two external batteries that are good for several hours. God fobid all else fails...we have the ambu bag. When the power went out the first time Allie opened her eyes with a look of terror. The generator was on in seconds. She slowly relaxed. The second time the power went out the generator went on and Allie smiled at me. Ahhh another hurdle overcome. I'm not dreading winter as much as I thought I would..
This month we said a heartbreaking goodbye to Tyra, one of my oldest and dearest friends. Tyra and I met when we were both very young new parents, raising our first babies, Sirena and Alonzo, born only two weeks apart. Since then we have seen each other through many major life changes -- divorce, births, deaths of parents, new husbands, etc. Actually, Tyra is responsible for my meeting Ron. When she married for the second time to Ron's best childhood friend, Bernie. I was Tyra's maid of honor and Ron Bernie's best man. A few years later, Tyra stood by me as my maid of honor and Bernie next to Ron at our wedding.
Tyra's passing came quickly and at the age of 52 way too soon. As much as I wanted to go see her in those last couple of weeks (they live in Manteca), I didn't feel okay about leaving Allie for that long. And I guess, a part of me was in denial that my friend's end could possibly be so near. We spoke on the phone and I was able to tell her how much I loved her. It's not the same as holding a loved one's hand and telling her in person though.
Allie watched me through these days and apologized again and again that "because of her" I couldn't go see Tyra. Not her fault I told her. Tyra understood. Still it was difficult for me and Allie knew it. It was a teary and tough time for both of us. When Allie heard Ron and I talk about when and where Tyra's service was to be and which of us would go Allie got my attention and said she wanted us both to go and she would go with us. Ron was skeptical. So was I. The service was at 10:30 which meant getting Allie up way earlier than usual and then spending well over two hours in rush traffic. At least an hour or two there and two hours back. Allie said she would make it and was determined to give me an opportunity to say goodbye to my special friend.
Adam came along so we could take turns holding Allie's head over the bumps. The service was held in what Allie said was the most beautiful church she had ever seen. Luckily the reception was held in a room near the church and was wheelchair accessible so we were able to stay and talk with members of the family we hadn't seen in a while, as well as several old friends. Allie looked fabulous and her mood was uplifting. She appeared comfortable and most appeared comfortable with her. She was surprised and touched to find out that Richard, an old friend of Ron's, we hadn't seen in a long while, follows this blog. She was also touched and impressed when Tyra's young grandaughter, Olivia, who had stayed with us a few days this past new years, talked with Allie as if nothing had changed since she had last seen her.
To say though that the day went without a hitch would be a bit of a stretch. Before getting back on the road in the process of helping Allie with some of her care, we reclined her chair back. Unfortunately, when we attempted to put it back up it wouldn't. With no way to fix it, she rode back home in that position. Once home (she's been up for about 9 hours by this time which is a veryyy long time for her)we were concerned about getting her out of the van via the lift since she was fully stretched out. To add to the mess her batteries had run their course and her vent was constantly beeping. Ron did what he could to try and fix the chair, but it was a no-go. We considered carrying her out, but finally gave the lift a go. She fit okay and was soon safely out of the van, rolling and beeping back to her room. The next challenge was getting the sling under her while she was in the chair in this position. Through it all Allie never complained. She had decided that this day was important to me and that no matter what happened, she was going to weather it. Thank you Allie. Once again you demonstrate to me what an amazing young woman you are. We love you so much and promise (me and dad) that we'll get better at this.
Of course the day did take its toll. That night was pretty difficult for Allie. Terrible neck pain and strange dreams made for a restless night.
Some days are full of accomplishments, but on many I still find myself asking how can anyone live this way? Days pass full of sadness, limitations and constant fear that the worst could still happen. And then I answer that we can and will. Until the day that Allie's recovery is such that we no longer have to.
Thanks for listening. Thanks for being there. Thanks for caring. Thanks for your prayers, love, and support in all ways.
Love, Peace & Happiness,
Deborah
Allie
Monday, October 19, 2009
Monday, October 5, 2009
Gifts of October
Dear Family & Friends,
First off a giant Thank You to Lacrosse & Football Coach's Curtis and Morris for organizing the fundraiser at Redwood Pizza. I hear the turnout was great.
Maybe it was being too afraid to attend the pizza event, maybe it was the encouraging messages she's been receiving on this blog, and maybe the not so subtle pressure I've been applying but, out of the blue the other day Allie said she wanted to go out to dinner and that she wanted to go to Mama Mia's. Wow. Who would have thought I'd be so excited at the thought of going out to dinner. Allie was actually voluntering to go out in public. To make it even easier I had received some cash (from a very generous anonymous person -THANK YOU-) so we didn't even have to feel guilty for indulging. When we got into town we were happy to see Keenan getting off the bus so he joined Ron, Adam, Allie and I for dinner. I hope Allie noticed that as we made our way to the restaurant every driver we passed had a smile for us, every face in the restaurant had a smile. I saw no stares and heard no comments. We ran into a couple of friends, which was great, and Allie lit up with things to say to all (in her very slight whisper of course). My daughter's incredibly beautiful smile continues to be the best and brightest part of any day, when I am blessed enough to see it. Allie was nervous and tried to put off suctioning as long as possible but the couple times it was necessary, Ron hit the alarm button asap to minimize the noise (goes off when you remove the breathing tube from the trach) and with the suction machine in its case and on the floor, the noise is minimal. The act is unusual but really need not be anymore distracting (maybe less so) than a person coughing or sneezing. All in all the evening was a great success.
This coming weekend is the lobster fest at Henry Cowell and Kerry has generously offered to treat us, if Allie will agree to go (BTW Kerry can't let you treat all of us you already do more than enough!). Brianna is coming from Chico to join us. Wish us luck on this our next outing as Allie learns to find comfort and take control of her world with its new challenges.
This month will be a very busy one for Allie. Tuesday she gets her Gtube removed (stomach feeding tube). I would have liked to have seen it removed before we left the hospital but it is typical to leave it in for a while (often a very long while or sometimes forever) in the event a person is unable to eat for any reason. Its removal marks for me a positive leap of faith. Also, this month she will have a trach change, x-rays of her neck, and an appointment with the neck & spine surgery doc. Unfortunately, we have seen little improvement at this point, in any strength or mobility in her neck muscles. She still requires someone to hold her head during transfers from bed to chair and back. She can't move her head to get comfortable on her pillow and is dependent on us to help her get it where she wants it to be. Also, being up in her chair (in spite of a custom head rest) she still has the "bobble head" thing going which is painful and extremely annoying to her. In spite of all, I have seen a wonderfully positive change in Allie lately. She has found her sense of humor again and will occasionally tease her dad and me and sometimes even make jokes about some of the harsher realities of our situation.
For the first time since the accident, this weekend, I found myself asking "why did this happen to Allie, why my baby girl?" -- please do not misunderstand, I would never wish this on anybody's child --. I was upset seeing her disappointment at a situation that didn't work out as she had hoped/planned (although she did her best to put up a good front). Like all moms, it's always difficult to watch a child in pain over being let down about something. Now when it happens, it is almost unbearable. Regardless, I was immediately ashamed of myself. The question is pointless, having no answer. Energy spent on it a waste of time and emotion. Bad things happen to good people. This I have always known.
Right now, Allie may not be able to breathe on her own, or move her arms and legs but her heart remains generous, sensitive, appreciative, vulnerable, and her brain remarkable. I love my little girl with everything I have (slightly less vulnerable a heart and not nearly as generous, certainly a far less remarkable brain). I love her more than ever no matter her physical limitations. As I am sure, anyone that really knows her would. I remain in awe at her ability to cope. Still, I pray multiple times a day for her recovery. And I ask you all, to please do the same. The ability to move her body didn't make her any more as special a person than she now is, but it allowed her a freedom to participate in the world in the way she longs to.
In the meantime I acknowledge October gifts: Two of my children's birthdays (Anjel & Adam), Allie's new sense of humor and her more frequent smiles, the absence of her feeding tube, and all of you!
And to Sharon -- such a great idea about the porch for Allie and you are so very kind and thoughtful. When you were here, you missed seeing the front of the house where we have a large beautiful covered porch that Allie can enjoy all year long.
Thank you thank you thank you.
Love, Peace & Happiness,
Deborah
On an incredibly sad note we just heard that our friend, Maydene Petty, lost her battle with cancer this week. We mourn her loss and our hearts go out to her two daughters, son and husband. She will be terribly missed. We are so very sorry.
First off a giant Thank You to Lacrosse & Football Coach's Curtis and Morris for organizing the fundraiser at Redwood Pizza. I hear the turnout was great.
Maybe it was being too afraid to attend the pizza event, maybe it was the encouraging messages she's been receiving on this blog, and maybe the not so subtle pressure I've been applying but, out of the blue the other day Allie said she wanted to go out to dinner and that she wanted to go to Mama Mia's. Wow. Who would have thought I'd be so excited at the thought of going out to dinner. Allie was actually voluntering to go out in public. To make it even easier I had received some cash (from a very generous anonymous person -THANK YOU-) so we didn't even have to feel guilty for indulging. When we got into town we were happy to see Keenan getting off the bus so he joined Ron, Adam, Allie and I for dinner. I hope Allie noticed that as we made our way to the restaurant every driver we passed had a smile for us, every face in the restaurant had a smile. I saw no stares and heard no comments. We ran into a couple of friends, which was great, and Allie lit up with things to say to all (in her very slight whisper of course). My daughter's incredibly beautiful smile continues to be the best and brightest part of any day, when I am blessed enough to see it. Allie was nervous and tried to put off suctioning as long as possible but the couple times it was necessary, Ron hit the alarm button asap to minimize the noise (goes off when you remove the breathing tube from the trach) and with the suction machine in its case and on the floor, the noise is minimal. The act is unusual but really need not be anymore distracting (maybe less so) than a person coughing or sneezing. All in all the evening was a great success.
This coming weekend is the lobster fest at Henry Cowell and Kerry has generously offered to treat us, if Allie will agree to go (BTW Kerry can't let you treat all of us you already do more than enough!). Brianna is coming from Chico to join us. Wish us luck on this our next outing as Allie learns to find comfort and take control of her world with its new challenges.
This month will be a very busy one for Allie. Tuesday she gets her Gtube removed (stomach feeding tube). I would have liked to have seen it removed before we left the hospital but it is typical to leave it in for a while (often a very long while or sometimes forever) in the event a person is unable to eat for any reason. Its removal marks for me a positive leap of faith. Also, this month she will have a trach change, x-rays of her neck, and an appointment with the neck & spine surgery doc. Unfortunately, we have seen little improvement at this point, in any strength or mobility in her neck muscles. She still requires someone to hold her head during transfers from bed to chair and back. She can't move her head to get comfortable on her pillow and is dependent on us to help her get it where she wants it to be. Also, being up in her chair (in spite of a custom head rest) she still has the "bobble head" thing going which is painful and extremely annoying to her. In spite of all, I have seen a wonderfully positive change in Allie lately. She has found her sense of humor again and will occasionally tease her dad and me and sometimes even make jokes about some of the harsher realities of our situation.
For the first time since the accident, this weekend, I found myself asking "why did this happen to Allie, why my baby girl?" -- please do not misunderstand, I would never wish this on anybody's child --. I was upset seeing her disappointment at a situation that didn't work out as she had hoped/planned (although she did her best to put up a good front). Like all moms, it's always difficult to watch a child in pain over being let down about something. Now when it happens, it is almost unbearable. Regardless, I was immediately ashamed of myself. The question is pointless, having no answer. Energy spent on it a waste of time and emotion. Bad things happen to good people. This I have always known.
Right now, Allie may not be able to breathe on her own, or move her arms and legs but her heart remains generous, sensitive, appreciative, vulnerable, and her brain remarkable. I love my little girl with everything I have (slightly less vulnerable a heart and not nearly as generous, certainly a far less remarkable brain). I love her more than ever no matter her physical limitations. As I am sure, anyone that really knows her would. I remain in awe at her ability to cope. Still, I pray multiple times a day for her recovery. And I ask you all, to please do the same. The ability to move her body didn't make her any more as special a person than she now is, but it allowed her a freedom to participate in the world in the way she longs to.
In the meantime I acknowledge October gifts: Two of my children's birthdays (Anjel & Adam), Allie's new sense of humor and her more frequent smiles, the absence of her feeding tube, and all of you!
And to Sharon -- such a great idea about the porch for Allie and you are so very kind and thoughtful. When you were here, you missed seeing the front of the house where we have a large beautiful covered porch that Allie can enjoy all year long.
Thank you thank you thank you.
Love, Peace & Happiness,
Deborah
On an incredibly sad note we just heard that our friend, Maydene Petty, lost her battle with cancer this week. We mourn her loss and our hearts go out to her two daughters, son and husband. She will be terribly missed. We are so very sorry.
Friday, September 18, 2009
Are we ready?
Hi Everyone,
2008 was a difficult year for my family (well mostly for Ron and me). I broke my back. Ron lost Jim, a best friend, and his 18 year old cat, Katie. I lost my brother David, my business partnership fell apart when I found out that a person I trusted, was a creep. Still we were thankful for so many things. We lived in a wonderful place. I had a teriffic husband that loved me and four fantastic kids. We had an abundance of good friends and a big loving family. 2009 was around the corner and was going to be a better year...a much better year, I kept telling myself and was pretty confident about it. It started out pretty good. I got a great new job, Ron and I were doing fine, and our kids were all healthy and happy. I guess the reason I am bringing this all up is that I've been thinking a lot lately of how much your perspective, the things you hope for, are thankful for, make you angry, laugh, smile and cry, things you think you can't handle or are looking forward to, are forever changing.
Instead of being a great year, in 2009 Allie sustained through no fault of hers, a life altering injury. Please don't get me wrong, I give thanks everyday that her life was spared. But, the "life" she was spared does not offer a quality of life even close to what she deserves. At 19 most are experiencing their first taste of independence. They are away at college or if at home as was true in Allie's case, are going to a local college, working, making their own schedule, saving (hopefully) and spending their own money, meeting new friends, learning what responsiblity really means, and for the most part coming and going as they choose. At 19, Al is now as helpless as an infant and even more fragile. She is completely dependent on the mother (and Dad of course) she was slowly and successfully working to prove she could be independent of.
However, I do believe that things happen for a reason. I'm not yet sure if it will be that Allie is an inspiration because of the miraculous recovery she has or the successful recovery from a new stem cell treatment. Or maybe her role will be one of teacher or counselor with a knowledge, experience and understanding of life and people most never have. But, as I have believed from the day she was born, Allie is special and is destined to do remarkable things. Right now the challenge is to keep her healthy and safe physically and to offer her opportunities to begin getting out in the world, so she can begin again to be healthy mentally as well. The getting out part is proving to be a bit difficult. Her sadness and fear of people staring, and judging her is overwhelming right now. We did manage to get her out for sushi to celebrate Jordan's birthday (no easy feat). Jordan being the sensitive and awesome friend she is, planned a luncheon for both mothers and daughters (knowing my presence is a given). Although Allie was extremely apprehensive about going, she ended up having a good time and was glad she went. Her one biggest worry about being out in public is the dang vent. She worries that it makes too much noise. She worries about how the tube coming out of her neck looks. She worries that people will be uncomfortable, be bothered by the sound and stare when she needs suctioning. For those of you that don't know about the suctioning, I'll try my best to explain. Allie hasn't the ability to cough or do anything to bring up or clear secretions the way we do. So when secretions gather in her lungs and block her ability to accept or get enough of the air that is being pumped into her by her vent, she needs help removing them. We do this with a small portable pump machine that creates suction. A small thin suction tube/catheter is attached. We remove her breathing tube from her trach and insert the thin tube down into her trach and occlude to create suction pulling the tube out slowly and hopefully the secretions with it. This is uncomfortable for Allie in more ways than one. First off, whenever her breathing tube is removed there is always some anxiety. Then depending on the thickness of the secretions, it can feel pretty lousy. If you go too deep (past the end of her trach) which is necessary sometimes, it can hurt. Personally, I think there is a sense of emotional "invasion" that goes along with the process as well. And again, she is completely dependent on someone being there or coming very quickly when the need for suction arises. This procedure isn't something we see every day. Allie requires suctioning throughout the day and night but it is a sure thing that when she eats, she will need it at least once or twice. Hence her concern about eating out in public as if being in a wheelchair that never fits quite right under a table, having to have someone asssit you with moving, eating and drinking, and not having a voice isn't enough! Allie's current condition makes her a part of our diverse population that many of us have had little or no exposure to. What is unfamiliar to us is likely to be scary. The support we've received tells me that this town really cares and is ready to help her feel comfortable, welcome and accepted. I hope I'm right.
The good news continues to be that Al is doing so much better physically since she's been home. We have had a couple issues and her blood pressure still requires close monitoring as it has a tendency to get pretty low sometimes (50's and 60's). Her sat (oxygen saturation) tends to be at a nice high number though, and her temp has been mostly steady. She did spike a fever the other night but, fortunately it did not last long. She's eating well and sleeping. Sometimes too much sleep as it is a way to postpone the day and thus avoid the realities of her situation. The mornings continue to be heartwrenching.
Thursday our new van was delivered and it is beautiful! Yesterday, Rachel, Allie's roomate when she was at Sonoma State and her boyfriend came for a visit. We all (Allie, Rachel, Cal, Rosalie, Ron and me) loaded up and took a maiden voyage to the wharf to pick up crab sandwiches. Allie chose not to get out of the van but, we were pleased to get her out of the house and up on the new lift for the first time. She was really happy to see Rachel and I was happy to spend some time with Rosalie.
Last night we got a call that Adam was at the Fair goofing around with a friend twisted an ankle and fell. They were on the way to Dominican because he hurt pretty bad. Now Adam is no stranger to broken bones and when I heard the pain in his voice, I knew it was not going to be good news. Ron met them in the emergency and sure enough his leg is badly broken. They got home around 1:30 am. We really should have built a one-story house.
I was up most of the night with Allie suctioning, moving her head, re-positioning her, putting the comforter on and taking it off, helping her drink water, etc. She was cranky (understatement). I lost my patience. She deserves someone that has never-ending patience and compassion. Instead she has me. Maybe, there are lessons for both of us here that will make us better people. Allie will benefit from learning more tolerance of hers and others shortcomings. I need a lot more patience and pray for it everyday. We are both stubborn. Sometimes that can be a good thing sometimes it is a stumbling block.
Things and people I am especially grateful for today:
Kathi, and the time she gives every morning so that Allie has range of motion
The amazing meals you are all providing us with (I think there may be a rally for allie cookbook in the future)
The Daltons for delivering the meals to us
Kerry, her love and emotional support for Allie, new friendship to me, and awesome brownies
Ray and his friend Todd for the beautiful planter box and flowers outside of Allie's bedroom window and Linda for the gorgeous crystal
Sharon for the yummy lemon soap, rainbow maker and other gifts for Allie (not to mention the remarkable meals)
My brother Douglas and sisters visits
Mine and Allie's friends that don't find our situation too akward or sad to keep them from visiting
Allie's bravery going out to lunch at Rumblefish (and the amazing group of women that we shared the time with), her getting up the lift and going for a ride in the new van, and occasional smile from her (for friends not me or Dad of course :))
Your continued support in the way of donations, prayers, meals, visits and love sent via comments on this blog
People I can talk to that really understand like Teena, Cheri & Katie
My awesome husband
My kids
An occasional rest sitting out in the sun
Any time spent with my horse
A renewed faith in the overall good of people
Please pray for Allie's recovery. More than anything she just wants to be happy again. Thank you, we love you.
Love, Peace & Happiness,
Deborah
2008 was a difficult year for my family (well mostly for Ron and me). I broke my back. Ron lost Jim, a best friend, and his 18 year old cat, Katie. I lost my brother David, my business partnership fell apart when I found out that a person I trusted, was a creep. Still we were thankful for so many things. We lived in a wonderful place. I had a teriffic husband that loved me and four fantastic kids. We had an abundance of good friends and a big loving family. 2009 was around the corner and was going to be a better year...a much better year, I kept telling myself and was pretty confident about it. It started out pretty good. I got a great new job, Ron and I were doing fine, and our kids were all healthy and happy. I guess the reason I am bringing this all up is that I've been thinking a lot lately of how much your perspective, the things you hope for, are thankful for, make you angry, laugh, smile and cry, things you think you can't handle or are looking forward to, are forever changing.
Instead of being a great year, in 2009 Allie sustained through no fault of hers, a life altering injury. Please don't get me wrong, I give thanks everyday that her life was spared. But, the "life" she was spared does not offer a quality of life even close to what she deserves. At 19 most are experiencing their first taste of independence. They are away at college or if at home as was true in Allie's case, are going to a local college, working, making their own schedule, saving (hopefully) and spending their own money, meeting new friends, learning what responsiblity really means, and for the most part coming and going as they choose. At 19, Al is now as helpless as an infant and even more fragile. She is completely dependent on the mother (and Dad of course) she was slowly and successfully working to prove she could be independent of.
However, I do believe that things happen for a reason. I'm not yet sure if it will be that Allie is an inspiration because of the miraculous recovery she has or the successful recovery from a new stem cell treatment. Or maybe her role will be one of teacher or counselor with a knowledge, experience and understanding of life and people most never have. But, as I have believed from the day she was born, Allie is special and is destined to do remarkable things. Right now the challenge is to keep her healthy and safe physically and to offer her opportunities to begin getting out in the world, so she can begin again to be healthy mentally as well. The getting out part is proving to be a bit difficult. Her sadness and fear of people staring, and judging her is overwhelming right now. We did manage to get her out for sushi to celebrate Jordan's birthday (no easy feat). Jordan being the sensitive and awesome friend she is, planned a luncheon for both mothers and daughters (knowing my presence is a given). Although Allie was extremely apprehensive about going, she ended up having a good time and was glad she went. Her one biggest worry about being out in public is the dang vent. She worries that it makes too much noise. She worries about how the tube coming out of her neck looks. She worries that people will be uncomfortable, be bothered by the sound and stare when she needs suctioning. For those of you that don't know about the suctioning, I'll try my best to explain. Allie hasn't the ability to cough or do anything to bring up or clear secretions the way we do. So when secretions gather in her lungs and block her ability to accept or get enough of the air that is being pumped into her by her vent, she needs help removing them. We do this with a small portable pump machine that creates suction. A small thin suction tube/catheter is attached. We remove her breathing tube from her trach and insert the thin tube down into her trach and occlude to create suction pulling the tube out slowly and hopefully the secretions with it. This is uncomfortable for Allie in more ways than one. First off, whenever her breathing tube is removed there is always some anxiety. Then depending on the thickness of the secretions, it can feel pretty lousy. If you go too deep (past the end of her trach) which is necessary sometimes, it can hurt. Personally, I think there is a sense of emotional "invasion" that goes along with the process as well. And again, she is completely dependent on someone being there or coming very quickly when the need for suction arises. This procedure isn't something we see every day. Allie requires suctioning throughout the day and night but it is a sure thing that when she eats, she will need it at least once or twice. Hence her concern about eating out in public as if being in a wheelchair that never fits quite right under a table, having to have someone asssit you with moving, eating and drinking, and not having a voice isn't enough! Allie's current condition makes her a part of our diverse population that many of us have had little or no exposure to. What is unfamiliar to us is likely to be scary. The support we've received tells me that this town really cares and is ready to help her feel comfortable, welcome and accepted. I hope I'm right.
The good news continues to be that Al is doing so much better physically since she's been home. We have had a couple issues and her blood pressure still requires close monitoring as it has a tendency to get pretty low sometimes (50's and 60's). Her sat (oxygen saturation) tends to be at a nice high number though, and her temp has been mostly steady. She did spike a fever the other night but, fortunately it did not last long. She's eating well and sleeping. Sometimes too much sleep as it is a way to postpone the day and thus avoid the realities of her situation. The mornings continue to be heartwrenching.
Thursday our new van was delivered and it is beautiful! Yesterday, Rachel, Allie's roomate when she was at Sonoma State and her boyfriend came for a visit. We all (Allie, Rachel, Cal, Rosalie, Ron and me) loaded up and took a maiden voyage to the wharf to pick up crab sandwiches. Allie chose not to get out of the van but, we were pleased to get her out of the house and up on the new lift for the first time. She was really happy to see Rachel and I was happy to spend some time with Rosalie.
Last night we got a call that Adam was at the Fair goofing around with a friend twisted an ankle and fell. They were on the way to Dominican because he hurt pretty bad. Now Adam is no stranger to broken bones and when I heard the pain in his voice, I knew it was not going to be good news. Ron met them in the emergency and sure enough his leg is badly broken. They got home around 1:30 am. We really should have built a one-story house.
I was up most of the night with Allie suctioning, moving her head, re-positioning her, putting the comforter on and taking it off, helping her drink water, etc. She was cranky (understatement). I lost my patience. She deserves someone that has never-ending patience and compassion. Instead she has me. Maybe, there are lessons for both of us here that will make us better people. Allie will benefit from learning more tolerance of hers and others shortcomings. I need a lot more patience and pray for it everyday. We are both stubborn. Sometimes that can be a good thing sometimes it is a stumbling block.
Things and people I am especially grateful for today:
Kathi, and the time she gives every morning so that Allie has range of motion
The amazing meals you are all providing us with (I think there may be a rally for allie cookbook in the future)
The Daltons for delivering the meals to us
Kerry, her love and emotional support for Allie, new friendship to me, and awesome brownies
Ray and his friend Todd for the beautiful planter box and flowers outside of Allie's bedroom window and Linda for the gorgeous crystal
Sharon for the yummy lemon soap, rainbow maker and other gifts for Allie (not to mention the remarkable meals)
My brother Douglas and sisters visits
Mine and Allie's friends that don't find our situation too akward or sad to keep them from visiting
Allie's bravery going out to lunch at Rumblefish (and the amazing group of women that we shared the time with), her getting up the lift and going for a ride in the new van, and occasional smile from her (for friends not me or Dad of course :))
Your continued support in the way of donations, prayers, meals, visits and love sent via comments on this blog
People I can talk to that really understand like Teena, Cheri & Katie
My awesome husband
My kids
An occasional rest sitting out in the sun
Any time spent with my horse
A renewed faith in the overall good of people
Please pray for Allie's recovery. More than anything she just wants to be happy again. Thank you, we love you.
Love, Peace & Happiness,
Deborah
Thursday, August 27, 2009
Is there truly any subsitute for a hug?
Dear Family & Friends,
First I must apologize for taking so long to get caught up...our internet has been down. Thanks to my sister, Victoria who came to visit today, it is up and running again. Who knew she was so savvy at these things!!
So, should I start out by talking about how well Allie is doing medically (for the most part)? She looks great. She's eating two to three meals a day and with the exception of one very frightening episode a few days ago, has been relatively stable with regard to her blood pressure. During a transfer from bed to chair Ron, Adam and I watched her face go pale and for a very brief but scary time she took on that blank stare which I know all to well is her passing out. Thank God it was brief and after "bagging" her for some extra big breaths and getting her back to bed for a few minutes we were able to help her into her chair for an incident free afternoon.
Friends continue to come by and spend time with her which is all she lives for right now. How blessed we are to have such wonderful people surrounding us. Other than a couple doctor's appts. and one fun trip to the pre-school Allie has not left the house. Hopefully, we will venture out soon to have dinner or see a movie. We still have the rental van which is a terrible financial drain but Allie would feel even more isolated and unsafe without it. We've purchased a van and hope to have it here the first week of September.
Maybe I should only talk about the good stuff but that would be very dishonest and misleading. Maybe that is what people want to hear, I'm not sure but you've all been way to loving and supportive, I think for that.
The truth is that Allie's sadness, feelings of loss and grief is so deep that there are times I fear I will start crying and never stop. By the time we are my age, we've all experienced loss of someone we love. This is so very different. When you lose someone you love you never forget them or the pain you feel when they first go away. Time however does ease that pain. I worry that this pain will not ever go away. Every morning Allie wakes up to a body that will not move no matter how hard she tries to make it. She cries. We talk about the future. I try and assure her that it will get better. It will not always be like this. Her path is a different one she envisioned before the accident but doesn't necessarily have to be a bad one.
Yesterday, Allie cried for the burden she thinks she has created for the family. She worries we will lose our house. She worries her friends will forget her and stop coming around. She worries I will become too old to care for her. She worries she will not recover. She worries that her friends are upset by her loss and that she cannot even give them a hug to make them feel better. Today she had to say goodbye to Haley who is off to college in San Diego. This is a most difficult time as friends return to school.
She wants to be able to comfort, say goodbye and hello to her friends with a hug her body will not enable her to give. She knows the power of a hug. My daughter is worried she can't comfort others! I try and tell her that a hug can be given with words and the look in a persons eyes. I might be lying to her. I'm not sure there is a subsitute for a hug. I lay down with her, wrap my arms around her and get as close as I can. Cheek to cheek I promise her it will get better. It will. She will have miraculous recovery. We will settle for nothing less.
Thank you for your prayers, unbelievable financial donations, incredible meals and friendships.
Prayers to Jerry, Ian and Connor for continued recovery.
We love you all.
Love, Peace & Happiness,
Deborah
First I must apologize for taking so long to get caught up...our internet has been down. Thanks to my sister, Victoria who came to visit today, it is up and running again. Who knew she was so savvy at these things!!
So, should I start out by talking about how well Allie is doing medically (for the most part)? She looks great. She's eating two to three meals a day and with the exception of one very frightening episode a few days ago, has been relatively stable with regard to her blood pressure. During a transfer from bed to chair Ron, Adam and I watched her face go pale and for a very brief but scary time she took on that blank stare which I know all to well is her passing out. Thank God it was brief and after "bagging" her for some extra big breaths and getting her back to bed for a few minutes we were able to help her into her chair for an incident free afternoon.
Friends continue to come by and spend time with her which is all she lives for right now. How blessed we are to have such wonderful people surrounding us. Other than a couple doctor's appts. and one fun trip to the pre-school Allie has not left the house. Hopefully, we will venture out soon to have dinner or see a movie. We still have the rental van which is a terrible financial drain but Allie would feel even more isolated and unsafe without it. We've purchased a van and hope to have it here the first week of September.
Maybe I should only talk about the good stuff but that would be very dishonest and misleading. Maybe that is what people want to hear, I'm not sure but you've all been way to loving and supportive, I think for that.
The truth is that Allie's sadness, feelings of loss and grief is so deep that there are times I fear I will start crying and never stop. By the time we are my age, we've all experienced loss of someone we love. This is so very different. When you lose someone you love you never forget them or the pain you feel when they first go away. Time however does ease that pain. I worry that this pain will not ever go away. Every morning Allie wakes up to a body that will not move no matter how hard she tries to make it. She cries. We talk about the future. I try and assure her that it will get better. It will not always be like this. Her path is a different one she envisioned before the accident but doesn't necessarily have to be a bad one.
Yesterday, Allie cried for the burden she thinks she has created for the family. She worries we will lose our house. She worries her friends will forget her and stop coming around. She worries I will become too old to care for her. She worries she will not recover. She worries that her friends are upset by her loss and that she cannot even give them a hug to make them feel better. Today she had to say goodbye to Haley who is off to college in San Diego. This is a most difficult time as friends return to school.
She wants to be able to comfort, say goodbye and hello to her friends with a hug her body will not enable her to give. She knows the power of a hug. My daughter is worried she can't comfort others! I try and tell her that a hug can be given with words and the look in a persons eyes. I might be lying to her. I'm not sure there is a subsitute for a hug. I lay down with her, wrap my arms around her and get as close as I can. Cheek to cheek I promise her it will get better. It will. She will have miraculous recovery. We will settle for nothing less.
Thank you for your prayers, unbelievable financial donations, incredible meals and friendships.
Prayers to Jerry, Ian and Connor for continued recovery.
We love you all.
Love, Peace & Happiness,
Deborah
Monday, August 10, 2009
Home Sweet Home
Hi Everyone,
On August 6, one day shy of a four month stay at SC Valley Medical, Allie came home at last.
Friends and family came to help pack up the stuff we had gathered over the months. Ron, Jordan, Samantha, Allie and me loaded up in the rental van and headed for home. The girls helped keep Allie's head steady over the bumps and it was mostly a good ride for her.
As we came down our driveway, the scene was one that would bring tears to anyone's eyes. It certainly did ours. Friends of Allie lined the driveway and yard with welcoming signs and the yard was full of balloons. Nervous, and a bit overwhelmed she smiled as we drove her chair onto the van lift and lowered her onto the ground (leaving the hospital we had help so this was our first time alone and I'm sure Allie was pretty nervous). But she was thrilled to see her friends and was touched beyond words. The house was full of great food and the visit was short but very sweet.
Allie was thrilled with her room and was happy to sleep in her new bed. The first night the girls had a sleep over and although they were up late once to sleep Allie mostly slept through the night. Amazing! There truly is no place like home.
As for me, walking into my home was a somewhat surreal experience. Quickly starting to feel right again and am so very grateful to be here!
I have a lot more to talk about. The last few days have been mostly good. It will have to wait. Gotta go.
We love you all so much and I am thankful everyday for the support of our family, friends and community. This journey is not one I pretend to have a handle on. It is not one that any of us would choose. It is one of the last I would have chosen for my daughter. We will try our best to take it one day at a time. I know we could not have gotten this far without all of you. Thank you.
Love, Peace & Happiness,
Deborah
On August 6, one day shy of a four month stay at SC Valley Medical, Allie came home at last.
Friends and family came to help pack up the stuff we had gathered over the months. Ron, Jordan, Samantha, Allie and me loaded up in the rental van and headed for home. The girls helped keep Allie's head steady over the bumps and it was mostly a good ride for her.
As we came down our driveway, the scene was one that would bring tears to anyone's eyes. It certainly did ours. Friends of Allie lined the driveway and yard with welcoming signs and the yard was full of balloons. Nervous, and a bit overwhelmed she smiled as we drove her chair onto the van lift and lowered her onto the ground (leaving the hospital we had help so this was our first time alone and I'm sure Allie was pretty nervous). But she was thrilled to see her friends and was touched beyond words. The house was full of great food and the visit was short but very sweet.
Allie was thrilled with her room and was happy to sleep in her new bed. The first night the girls had a sleep over and although they were up late once to sleep Allie mostly slept through the night. Amazing! There truly is no place like home.
As for me, walking into my home was a somewhat surreal experience. Quickly starting to feel right again and am so very grateful to be here!
I have a lot more to talk about. The last few days have been mostly good. It will have to wait. Gotta go.
We love you all so much and I am thankful everyday for the support of our family, friends and community. This journey is not one I pretend to have a handle on. It is not one that any of us would choose. It is one of the last I would have chosen for my daughter. We will try our best to take it one day at a time. I know we could not have gotten this far without all of you. Thank you.
Love, Peace & Happiness,
Deborah
Friday, July 31, 2009
My Angel loses her halo!!!
Dear Friends & Family,
An incredibly wonderful thing happened yesterday. Allie's halo vest was removed. She is wearing a neck brace since the muscles in her neck have weakened so much. We are fondly referring to her as our "bobble head". In time, the muscles will be able to once again support her head, but for the next three months she will wear the neck brace at all times. It was pretty scary for Al (and me) as they removed the screws from her head. But she handled it like a champ and in fact went out for a ride on the freeway today and then to Hobee's for lunch with Jordan, Brianna, her nurse Merlyn, Scott from Rec therapy, and me. She's a bit sore and learning to move her and get her comfortable is a new challenge and experience. Another piece of good news....our discharge date is Wednesday.
The not so great news is that Allie is on a course of medicine to resolve some granulation she has in her throat which is preventing her from voicing and can make a trach change dicey. That is our biggest concern right now. Other than that she is making great progress physically and emotionally. She's eating all three meals now and is taking most of her meds by mouth. We are going to start working on her Doc. to see if we can get him to agree to remove her stomach tube. That will be the next great milestone.
Her smile when friends visit is priceless and although her nights continue to be without sleep and her sadness is at times overwhelming, her coping skills and outlook is beyond my greatest hope. Her friends continue to amaze me with their compassion, dedication and overall love for her.
Recently Allie attended peer support group although she remains the most "disabled" in the unit. She attends skills group and plays poker, blockus and other games with the competitive edge we all know her best for.
We cannot wait to be back among our friends. We miss you all so much and are forever grateful for all the love, prayers, support, meals, help with pets, visits, donations, etc. I can't wait for Al to see her new room. I haven't seen it yet myself, but hear it is perfect. Bamboo floors and pretty green walls. We hope to have a van this weekend to bring her home in.
See you all soon.
Love, Peace & Happiness,
Deborah
An incredibly wonderful thing happened yesterday. Allie's halo vest was removed. She is wearing a neck brace since the muscles in her neck have weakened so much. We are fondly referring to her as our "bobble head". In time, the muscles will be able to once again support her head, but for the next three months she will wear the neck brace at all times. It was pretty scary for Al (and me) as they removed the screws from her head. But she handled it like a champ and in fact went out for a ride on the freeway today and then to Hobee's for lunch with Jordan, Brianna, her nurse Merlyn, Scott from Rec therapy, and me. She's a bit sore and learning to move her and get her comfortable is a new challenge and experience. Another piece of good news....our discharge date is Wednesday.
The not so great news is that Allie is on a course of medicine to resolve some granulation she has in her throat which is preventing her from voicing and can make a trach change dicey. That is our biggest concern right now. Other than that she is making great progress physically and emotionally. She's eating all three meals now and is taking most of her meds by mouth. We are going to start working on her Doc. to see if we can get him to agree to remove her stomach tube. That will be the next great milestone.
Her smile when friends visit is priceless and although her nights continue to be without sleep and her sadness is at times overwhelming, her coping skills and outlook is beyond my greatest hope. Her friends continue to amaze me with their compassion, dedication and overall love for her.
Recently Allie attended peer support group although she remains the most "disabled" in the unit. She attends skills group and plays poker, blockus and other games with the competitive edge we all know her best for.
We cannot wait to be back among our friends. We miss you all so much and are forever grateful for all the love, prayers, support, meals, help with pets, visits, donations, etc. I can't wait for Al to see her new room. I haven't seen it yet myself, but hear it is perfect. Bamboo floors and pretty green walls. We hope to have a van this weekend to bring her home in.
See you all soon.
Love, Peace & Happiness,
Deborah
Tuesday, July 21, 2009
Quick Update
Hi Everyone,
Thank you for your well wishes and support and concern over Allie's powerchair issues. The good news is that Bob Ludlow has come through for Al once again and has loaned her a chair, until we can obtain one for her. Thank you Bob!! You have been awesome beyond words and we love you.
The not so good news is that our discharge date has been delayed once again. Several issues have yet to be resolved. CCS has not committed officially to take Allie's case and help with expenses such as her vent (3K per month), wheelchair, as well as the many other items required. The bed that was provided is ancient and unacceptable as it is semi-electric and does not have the feature that allows her head to drop quickly. When Allie's BP drops it is critical that we lower her head or quickly raise her feet within seconds. Without this feature, it is not safe to have Allie come home to that bed. We have purchased a bed with a special mattress with some of Al's fundraiser money but that will not arrive for several weeks.
Anyway, we were both pretty bummed yesterday as we were counting the nights left sleeping in the hospital. We both miss our home, family, friends, pets and the redwoods so much! It is difficult for Allie to get her head ready for the big transisition and then find out it isn't happening yet. On the positive side though this gives her more time to work with her Doc that is back from vacation. She's eating three meals a day now and is weaning off some meds, which is incredibly wonderful.
Now that she is eating the next milestone is for her to talk. She will be working with the doctor's over the next couple of days to find out what's up with her trach. She has been unable to sleep for several nights. We are both getting pretty cranky as a result. Still, we continue to enjoy some fresh air on the patio every day and visits from friends are a huge treat.
We look forward to hearing from her surgeon soon (hopefully) for an idea as to when the halo comes off.
Thank you so much for your support. We really appreciate the response to Allie's need for a chair. I was so surprised to get offers just from the mention on her blog. It continues to amaze me how wonderful our community is.
Allie's strength of character and ability to get through each day is beyond my comprehension. She is truly my beautiful hero as are all of you for your love and support.
Love, Peace & Happiness,
Deborah
Thank you for your well wishes and support and concern over Allie's powerchair issues. The good news is that Bob Ludlow has come through for Al once again and has loaned her a chair, until we can obtain one for her. Thank you Bob!! You have been awesome beyond words and we love you.
The not so good news is that our discharge date has been delayed once again. Several issues have yet to be resolved. CCS has not committed officially to take Allie's case and help with expenses such as her vent (3K per month), wheelchair, as well as the many other items required. The bed that was provided is ancient and unacceptable as it is semi-electric and does not have the feature that allows her head to drop quickly. When Allie's BP drops it is critical that we lower her head or quickly raise her feet within seconds. Without this feature, it is not safe to have Allie come home to that bed. We have purchased a bed with a special mattress with some of Al's fundraiser money but that will not arrive for several weeks.
Anyway, we were both pretty bummed yesterday as we were counting the nights left sleeping in the hospital. We both miss our home, family, friends, pets and the redwoods so much! It is difficult for Allie to get her head ready for the big transisition and then find out it isn't happening yet. On the positive side though this gives her more time to work with her Doc that is back from vacation. She's eating three meals a day now and is weaning off some meds, which is incredibly wonderful.
Now that she is eating the next milestone is for her to talk. She will be working with the doctor's over the next couple of days to find out what's up with her trach. She has been unable to sleep for several nights. We are both getting pretty cranky as a result. Still, we continue to enjoy some fresh air on the patio every day and visits from friends are a huge treat.
We look forward to hearing from her surgeon soon (hopefully) for an idea as to when the halo comes off.
Thank you so much for your support. We really appreciate the response to Allie's need for a chair. I was so surprised to get offers just from the mention on her blog. It continues to amaze me how wonderful our community is.
Allie's strength of character and ability to get through each day is beyond my comprehension. She is truly my beautiful hero as are all of you for your love and support.
Love, Peace & Happiness,
Deborah
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